New policy on sharing deceased MyCode participants’ results

Published Dec. 21, 2017

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One of the commitments of the MyCode research program is to inform participants when we find something in their DNA that represents a potential risk to their health.
Hundreds of MyCode research participants have already learned of specific, personal health risks that were found by looking at their DNA.

But what should MyCode leadership do when a participant dies before the health risk is discovered from a sample he or she had previously donated.

In the event of a deceased MyCode participant, we obviously can’t share news of a genetic health risk with the participant. However, we could share it with a family member or designated representative. Immediate family members have a 50 percent chance of having the same inherited condition.

The MyCode Community Health Initiative, together with its Ethics Advisory Council, has grappled with this question. They decided that Geisinger has a duty to try to reach potentially affected family members when a participant dies before receiving results.

Therefore, in cases where the deceased participant has a positive result for a genetic condition, our policy is that we will reach out to the participant’s emergency contact.

We will ask the contact to help us identify the deceased person’s designated representative.

We will then ask the representative if they would be willing to receive and review the genetic information discovered about the deceased. If the representative declines or says that no results should be shared, the file will be closed.

If the personal representative wishes to share results with family members of the deceased, then support will be provided to help them in notifying relatives and in sharing the results with them.